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for tell about type 1 diabetes (and celiac)(and LADA)

vomit

I am not sporty and I do not run on a track. Yesterday I ran over to the high school track anyway, in order to stumble across a lacrosse game taking place in an adjacent field. I couldn’t tell if Tab wanted/did not want me to watch. I hadn’t run on a track since the time a few (ten?) years ago, when I had the Nike sneakers with a secret compartment under the insole that held a Dexcom transmitter-sized chip. As I recall, I had to run a precisely measured mile to calibrate the Nike chip.

The smell of the track made me think of that (Nike)calibration, and how, in our current life, we say “calibrate” every day, as a normal Dexcom thing. As of this week I’ve been calibrated myself to be zeroed-out with two (three?) T1d’s and one celiac. That is my baseline, my normal, I like it, it’s fine. We’re fine. We do whatever we want, we just carry some dried pineapple and medical stuff around with us. It’s fine. Really.

GET TO THE POINT: Bubs has not been to school since March 24th. Anyone reading this post has already heard about this from me. He was suddenly nauseated/unable to eat/the feeling began on a Friday afternoon = not algebra-related. The next day, he was in so much pain we thought he had appendicitis and took him to the ER. (Fun fact: I was in Newport on the Cliff Walk with T1d friends when Joe took Bubs to the ER.) The ER examined him and said it was probably a nasty virus and would be over in a few days. Also, here is Zofran, goodbye.

Bubs was not better in a few days. His pediatrician retired this year, and Bubs hadn’t yet met his new primary care doctor, and her office said she couldn’t see him until his initial “well visit,” scheduled for later on in April. We were stuck. I called the endocrinologist on call. She said it sounded like a virus, and would probably go away, and that this is not really an endo thing.

The nausea and pain did not go away. Also he had ketones (from not eating), so his BG was awesome, but we’d have to give him a big bolus (advised each time by the on call endo, who always said to give six units, and always said to call if the ketones came back, and eventually I was like, why do you want me to keep calling, is it always going to be six units? And they were like, yes. Six.) to get rid of the ketones, and then he’d have to drink enough carbs via Gatorade and that made him sick. It was ketones-insulin-Gatorade-increased pain + output-sleep. Repeat x infinity.

After about a week of missed school, I remembered (what luck!) that Bubs has celiac, and therefore a GI doctor—maybe he would see Bubs. The GI doctor thought it sounded like a virus. He said it has been a terrible season for stomach bugs, and that even he—who had not vomited since childhood—was barfing this winter. He conceded that a virus does not usually last this long, but thought maybe he’d caught a second virus right on the tail end of an initial virus.

Whatever it was did not go away. Bubs started having (pardon me) diarrhea or barfing whenever he ate or drank, even a tiny amount. He would wake up in the middle of the night to barf.

Blood tests ordered by the GI doctor showed high eosinophils, but normal whatever-the-usual-markers-for-Crohn’s are. Eosinophils go with parasitic infections, so GI had us collect stool samples (test tubes with adorable hedgehog-sized sporks built into their caps!). The lab thought we’d misunderstood, and had provided urine samples: yellow liquid. No, that’s his stool. No parasites were found. After about two weeks of being sick, the GI doctor scheduled an upper and lower scope, to get biopsies.

Let’s do ourselves a favor and not let me describe the hospital, where Bubs was exhausted, nauseated, and forced to drink a gallon of Crystal Light lemonade-seasoned Miralax from ten o’clock in the morning until midnight, updated at midnight to be continued until five o’clock in the morning, possibly because some nurses thought his stool needed to look like “clear water” even though others said it was fine if it looked like “iced tea with no flakes.” Also someone said this sentence (cheerfully) to Bubs, “Well, since you already have Type 1 diabetes, you’re probably used to being sick, since you have a bad immune system.” Also two separate people of different medical degrees thought the insulin pump was surgically implanted under general anesthesia.

Of course I googled about eosinophils, and saw that the most common reason to be high in them is parasitic infection. After that, leukemia. Of course I googled all about Crohn’s and read sentences like, “Many people with Crohn’s manage to lead normal lives,” and “Always bring along a change of clothing when you leave the house.” (I tried to not read a lot about Crohn’s, but of course I looked at these blogs.) (Especially I liked this one and this one, with people so adorable you can sort of bear toying with the possibility of maybe needing them someday as your personal advisors.)

After the scopes, the doctor described seeing an inflamed, damaged gut. I believe he said all the way from the esophagus through the stomach, to the beginning of the small intestine was wrecked. (Only he did not use the word “wrecked.”) I think he said the large intestine was OK. They took a bunch of biopsies and samples.

Today, this result:

It does not look like Crohn’s. (I think the doctor said he’s 99% certain it is not that. Maybe 95% certain. 95 – 99% certain.) (I think he also said you sometimes see eosinophils with Crohn’s, but Bubs has so many patches <word?> of eosinophils, but doesn’t have whatever else Crohn’s people have, that it does not seem like a Crohn’s thing.)

AND

It could be an allergy, to something like…milk. Or eggs. Or soy. (But it does not make sense to the GI doctor that an allergy to something he’s eaten his whole life would show up suddenly and so acutely and at this age.) (I did not ask if it could be an allergy to caffeine free Diet Coke. That is the only new food I can think of in Bubs’s life. I know that this is poison. I bought it to encourage him to drink more if he is high.)

AND

It most closely resembles a parasitic infection, except they did not find a parasite, and it is also weird for a parasite to be in the esophagus. (I think that’s what the GI doctor said.) (Also: how would someone get a rare parasite, if they never leave Rhode Island? And wouldn’t the rest of our family have the parasite too?)

So the choices are:

Take Flagyl to kill the imagined parasite. (But the doctor does not like to prescribe antibiotics unless a parasite is found. But this will not harm him. But it is super weird to take Flagyl when no parasite has been found. But a parasite could still be found.) (Incidentally, Flagyl is used by people with Crohn’s. I have no idea why. Do they have a parasite?) (One more thing: when Bubs feels like eating, he feels like eating Applegate Genoa salami. Is that a clue? Do certain parasites crave salami?)

OR

Take a short course (5 days) of a steroid to reduce inflammation. (But this will make BG high. But he can just take extra insulin.) (Also this doesn’t help determine what the allergy is, if this is an allergy.) (On the other hand, it will probably make him feel better regardless of the cause of the inflammation and might make him feel hungrier, so he will be able to consume more, and getting more nutrition could help him heal.)

OR

Go to an allergist. (But it will take a long, long, long time to get an appointment, and we don’t want him to feel this bad while he waits for the appointment.)

(AND

I know what you’re/I’m thinking, but our GI doctor recommended against eliminating possible allergens, and to focus for now on getting him to eat anything that is food. Of any kind.)

OR

Do nothing and see if he continues to feel better. (He does seem to feel slightly better today, or—at least—he is hunched over in pain less often.)

AND

Our GI doctor has a doctor friend in Cincinnati who is an expert in pediatric eosinophilia, so our GI guy will talk to his friend to see if the friend has any good ideas. Cincinnati!

AND

Bubs is scheduled to have an MRI next week, so the GI doctor can see the parts of his intestine in the middle, where the upper and lower scopes don’t reach. I have no idea what this will mean.

By the by, we are in the middle of moving (locally) and I started a new job (the same week B. got sick) and it was Tab’s birthday this week, and we practically ignored him, and he was so grateful for an egg-gouda sandwich from Starbucks that he declared it the best birthday ever. (#16.) He read this blog once a few months ago and was amused. In case he sees this, let’s pretend I didn’t mention him.